Tuesday, June 29, 2010

Kaidence was SUPER grumpy last night coming out of the anesthesia, WOW! She was very upset that they put her IV in her foot and not her hand. The moods swings were a little more than I had seen with the versed wearing off in the past. However, awhile after we got her home she seemed to click back into her normal, sweet self. She was a hungry stinker and had 2 bowls of Captain Crunch and some cheese (and she wanted a taste of Coke...no idea where that comes from). So much for slowly getting in to her regular diet. But she did notice that she didn't have an owie on her neck.

So a little history leading up to last nights events for a better understanding. Back in 2007 they started scoping Kaidence when she was in the CICU trying to figure out breathing issues, digestive issues etc. After her transplant they once again looked closely at things because she could not clear her own secretions. At one point a trache was discussed, but very briefly. It was determined during these procedures that Kaidences right vocal chord was indeed paralyzed. He then gave us a year for some slight possible recovery of it, but after that no improvement would take place. So when we took her home post transplant Kaidence was not allowed ANYTHING by mouth, because she could not swallow. When you have a paralyzed vocal chord it affects, your O2, swallowing (your airway never is completely closed) and speech. All of which Kaidence has really struggled with. Months into being home in 2008 Kaidence would undergo all the fancy swallow studies to see if it was safe for her to eat. All the while it being reconfirmed that the vocal chord on the right was paralyzed still. Last summer Kaidence had her tonsils and adenoids removed by a different doc. At that time he also noticed the problem and then referred us on to this other doc for the repair of the chord.

About 2 months ago we took K in to see this doctor. He is the same one that saw her all those times in the CICU and did many of the swallow studies for us. At that point in time I explained that I felt her vocal chord was better because Kaidence now has a faint cry and voice verses nothing at all before. I was hopeful, but then he scoped her that same day. He then told me that her vocal chord was still paralyzed and after reviewing records, it was just as bad as it was originally. It had made NO recovery whatsoever. At this point it was so bad that it was laying off to the side and not in the place it should have been. Your vocal chords make a "V" shape when open. That was when we knew that the surgery was needed to repair this.

We had high hopes that this would fix all of our current issues with Kaidence and so last night when we found out it was no longer the case, I was not too sure what to think. Was this just some freakish misunderstanding for the last 3 years and after all the scopes that confirmed this problem? Or was this another answer to prayers and evidence of the power of the priesthood? Looking back at her blessing last evening before going in, I prefer to believe it was the last situation.

Like I said last night, the doctor was shocked himself. He was not expecting this situation. Both vocal chords were where they should be and both vocal chords moving as she was breathing on her own. Both of which have never been seen before on Kaidence. So needless to say, we are anxious to look further into this situation. We count our blessing that he double checked before he cut. We will meet with this doc and K's GI doc together to discuss what to do next. Likely she will definitely have the 'floppy things' surgically removed. It is also very likely they will want a full GI scope on her and many other test to confirm if this is truly due to reflux. She was checked before to help determine if a Nissen was needed with her G-tube, but it was then determined unnecessary. He does not think that getting the reflux under control will make much difference with the choking and soft voice, but as we know....anything is possible.

So we are done sitting around in the house and letting our summer pass us by. We start swimming lessons next week and look forward to the vacation that was canceled for all of this surgery stuff. I am ready and I am pretty sure my kiddos are too. Thanks for always sending love and prayers our way!

Monday, June 28, 2010

As you all know, Miss K does not follow the rules.......she makes her own. A little over an hour into surgery the doc came out and explained that he no longer thinks that K's vocal chords are paralyzed. He seemed very surprised. However he did find some weird swelling and floppy things in her throat consistent with acid reflux. The floppy things can be surgically removed, however not tonight. We need to do some investigating into whether this is really the case. Removing the 'floppy things' will help improve her sleep apnea and could possibly help her sleep apnea. He however does NOT seem to think that it will help her choking issues and her very soft voice. Bummer! That part has me concerned.

The plan, we will go home tonight once the anesthesia wear off and then meet with the surgeon and her GI doctor to get a plan in place. Post transplant she use to vomit 8-10 times daily, but has not for a long time. We had to take her off reflux meds because it caused her white count to drop dangerously low. We haven't seen any problems with reflux, but I guess you never know.

I am tired, smell like pee and need to go be with my baby girl. I wonder if she will be shocked by how easy her surgery was. Do you think she will be sad that she still doesn't have her Mermaid voice?

They took Miss K in around 6:15 this evening. The doc said that it could take anywhere from 2-4 hours depending on how small the nerves are in her neck. I have a feeling that they will be pretty small, so I am not expecting anything too soon.

Kaidence did amazingly well today without being able to eat. She is such a sweetheart. She never complained, cried or threw a fit. She is such a good girl. Before surgery Mike and I took her to see Toy Story 3. She loved the movie and then we drove straight to the hospital.

We checked in and then the nurse gave her some versed, but nobody came to take Kaidence into surgery. Therefore, my sweet little Kaidence peed all over my lap. I think she tried telling me, but her speech was so slurred it was hard to understand anything. She had that oooopps look on her face, but thats ok. Just looks like my water broke and I now smell like urine.

Thanks for checking in on K, we will keep you posted if we hear anything.

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About Me

I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!